Saturday, November 16, 2013

Missing the Point

A couple of days ago an article written by Suzanne Wright appeared on the Autism Speaks blog entitled "Autism Speaks to Washington - A Call for Action". The point of the article was that autism is not only a growing problem but one that needs a national response to solve.

Parts of the autism community have been less than amused by the article. They are currently in the middle of having a collective conniption and declared that Autism Speaks is the new incarnation of the (insert your particular incarnation of ultimate evil here).

While it is possible that Autism Speaks should have been more sensitive to the particular sensitivities of this small yet very vocal group, I don't think what they said was that far off base for most autism families.

Since I might be the only one who thinks so, let me explain exactly what I see as the message in easy to digest points -

The number of children diagnosed with autism is growing rapidly.

Autism is hard on families. Many families struggle on a day to day basis with autism and are doing little more than treading water.

Autism is extremely expensive in financial terms for everyone and in emotional and health terms for families.

The outcomes for children with autism are poor and taking care of someone for their entire life is pretty expensive.

So ...

We need a coordinated, national plan that covers everything from early detection to appropriate/best treatments to dealing with what happens when these children become adults.

None of those points should be controversial ... and yet for some reason they are. In my humble opinion, the part of the autism community that has an issue with these ideas need to get their collective heads out of their asses and start becoming part of the solution rather than being part of the problem.

The primary argument against these points seems to be that there was not sufficient language in the post indicating that the points don't apply to everyone with autism. My response is that that argument would apply to anything that anybody has ever said about autism.

There is not a single statement that you can make that would apply to everyone that has autism. There is not even one single trait that everyone with autism shares. So, by this logic, every single thing that anybody has ever said or written would need to be changed to indicate that they are only talking about a subset of autism.

For example, in his response to the Autism Speaks post, John Elder Robison says -

"We do not like hearing that we are defective or diseased. We do not like hearing that we are part of an epidemic. We are not problems for our parents or society, or genes to be eliminated."

Clearly he is committing the exact same sin that Autism Speaks did - he is making blanket statements about people with autism without quantifying that he is only speaking for some people with autism.

If there is one thing that drives me nuts it is hypocrisy. Another is pretending reality isn't true because you don't like it. So no matter how much Mr. Robison's royal "We" doesn't like hearing that they are part of an epidemic, the reality is that the number of people diagnosed with autism is growing rapidly for unknown reasons. Go look up what the word "epidemic" means.

Someone asked me on another blog if there is a way to have an honest conversation about autism and my answer was no. It is not currently possible to have an honest conversation because to have any honest, open conversation you can't start from the position that one side's view are wrong.

When it comes to autism, you have to be able to be free to describe the problems associated with a medical label without someone taking offense because you said something that they don't like or don't want to believe.

More importantly, when you are talking about public health issues such as autism you either start your conversations based on reliable, accurate information or you don't.

If you don't then don't waste anyone's time pretending that you are talking about anything other than your own ignorant opinion. If you do then start with the basics about the autism population as a whole. Start by answering some simple questions about autism such as -

How many people are receiving a diagnosis of autism and how quickly is the number changing?

What are the known, proven causes of autism and the increase? Not the "we think", "it looks like", "it could be" but rather causes that can be demonstrated and can be shown in multiple data sets. For example you can't say its older parents without demonstrating empirically that the parents of children on the spectrum are in fact older, ruling out other possible related factors (i.e. the association between socioeconomic status and the age that you have children), and showing exactly how older parents lead to biological changes that lead to the behaviors of autism.

What are the typical impairments in communication and how severe are they? How many people have the ability to use functional communication at all, how many can carry on even simple conversations, how many can have complex conversations?

How many people are functionally impaired enough by their autism that they have or appear to have intellectual disability? How many appear as borderline intellectual disabled?

How many people go on to develop other, related conditions such as epilepsy that are much more common in autism?

As the children become adults, what happens to them? How many are able to live independently and hold down a job? How many are unable to take care of themselves? Where do the ones that are unable to take care of themselves live?

Start answering these questions for yourself from reliable, evidence based sources and ignore the autism talking heads. Don't take theories from people who have a stated ideology, whatever that ideology might be, at face value. And for heaven sake, don't assume that someone is an expert on autism because they have or claim to have autism.

Go to the original sources and think for yourself.

If you do that and put in the time learning about the reality of autism rather than the feel good or doomsday nonsense that comes from so many sources then you might start understanding that the Autism Speaks post isn't that far out of line with reality. It isn't a pretty or particularly happy reality or one that I want to embrace. But the thing about reality is that it doesn't require us to believe it in order to be true.

As much as I don't like Autism Speaks, the post was right. Autism is a growing public health crisis and one that we ignore at our own risk.

Your first four points are well taken. However, I see a major flaw point number 5. We already have a nationally coordinated plan to deal with the problems of autism. It is called the combating autism act. So far this law has been a disaster in that it reauthorized the IACC and to date they have appointed five anti-cure autistics as public members and not a single pro-cure member, even though Roger Kulp has stated he's interested in serving (he's also interested in serving as a scientific advisory and treatment board member at autism speaks, filling the presumed vacancy created by Robison's resignation as well). The IACC in particular and the combating autism act, in my opinion, has done nothing to help autistic people and is a complete waste of taxpayer's money. So I don't completely understand Ms. Wright's point. Do we need to replace the CAA or is she for another competing national plan. I don't think a national plan is workable and the government has not done a good job for us, so I'm not sure why another national plan would be any better than the CAA. Admittedly, the private sector has not done much better, though I still hope breakthroughs are made someday.

I am thankful for Ms. Wright's op-ed piece though. It prompted Robison's resignation from the autism speaks board and that alone made it well worth it IMO.

Combating Autism Act is up for re authorization. I say the definition of disability used in the Amer with Disabil Act should apply in definition of the disorder - that might cut through some of the nonsense.